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    Newly diagnosed

    Hello everyone, my name is Alan and I was finally diagnosed last Thursday. As a positive it got my family all together for the fist time in ages and we got to meet and hold our 13 week old granddaughter for the first time.
    I am expecting my medication to arrive tomorrow. I am 65 still work for myself and hope to continue to do so for as long as practical. I look forward to talking to many of you over the coming months and hopefully

    #2
    This is the first time I have used a forum, normally avoiding social media, but the first thing should have ended .... and hopefully years.

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      #3
      Welcome Alan. Sorry you've had to join us.

      Like you said, double edged sword for a family reunion, eh - every cloud etc. 😁

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        I see that you are a regular here. how long since you were mobile, are you confined to a single space or can do you get outside and feel the wind and sunshine.

        I know there will be hard days ahead, but like knowing war is coming and experiencing it first hand will be two completely different things. I would like to know whether exercising will help me at my early stage.

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          #5
          I progressed quickly - in a wheelchair full-time since 2008 (just under a year from diagnosis) and yes, I get to feel the weather. I am very advanced in my ALS/MND, so I don't tend to stray far from home and that's just fine by me.

          But everyone is different in their progression and in how they cope with what's thrown at them. You said you were "finally diagnosed" on Thursday - does that mean your progression is slow and/or subtle? In clear cut cases, the diagnosis process is usually fairly straightforward.

          Yes, do keep mobile and exercising but don't overdo it. Talk to the physiotherapist in the MND Clinic for guidance.

          I know it's very early days but did the neurologist mention any clinical trials to you?
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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            #6
            Hi Alan,

            A warm welcome to the forum ! I am so sorry for your diagnosis... it's such a shock even if it is half expected.

            It's good you've found us because there is friendship, advice and support with occasional humour on here. It sounds like you have a really positive attitude which will help you and well done for joining a forum ! How lovely to meet you new granddaughter !

            Take Care,
            Love Debbie

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              #7
              Ellie, I have "known" for a few months but our GP practice was a bit slow on the uptake, if a pain doesn't fit their expectations it probably doesn't exist. After four months got to see someone interested (ignoring the GP who over the phone thought it may be a vitamin D deficiency so a month lost there too) and after 2 months I spoke to a neurologist and from there its only taken about 6 weeks. The funny side was the diversion of possible prostate issue which resulted in one of the most painful events in my life, my eyes are still watering. That proved clear.

              Almost the hardest thing was telling my two oldest kids last week, the youngest has seen the condition develop.

              But that fails into insignificance compared to reading the stories on this forum. My heart breaks to hear people's situations, at the moment I have my work which I still enjoy and a close family including two beautiful granddaughters, one of whom lives with us. My office looks across a meadow with cows and/or horses.

              No one has mentioned clinical trials, I did find one the MND register and provided some basic information. I would be happy to be included in anything to help others that may include my children. The consultant was a little vague on the likelihood of the condition being passed on.

              Cheers Alan

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                #8
                Debbie

                Thank you for your kind message. I did text my son today and say that everyone would be relieved that there would be no more dad dancing, but he did promise to keep up the tradition, although he and his wife are struggling to conceive.

                Cheers Alan :-)

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                  #9
                  Welcome Alan, and welcome to this elite club, keep working and dad dancing as long as you it will help distract you and you will find new ways of doing things, badly timing hand jive?
                  s
                  As long as there’s golf and beer I’m happy

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                    #10
                    Hi Alan

                    Welcome to our gang of amazing people. Here you will find huge amounts information, advice and love; and a safe place to let off steam occasionally.

                    It sounds like you have a lovely family around you and a great location in which to work. Keep going as long as you can!

                    Well done for putting yourself on the MND Register.

                    You’ll have lots to think about and arrange in coming weeks. There’s no rush, but at some point consider voice banking while your voice is still strong.

                    All the best
                    Doug

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                      #11
                      Welcome Alan. Sounds like you are coping and telling the family is one of the most important but difficult tasks but once out of the way, is a relief. Don’t hesitate toast questions, someone here will probably know the answer. Also MNDA have fantastic range of helpful information.

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                        #12
                        Welcome Alan to our exclusive little gang nobody wants to join. Loads of support on here from some lovely people.
                        Good luck Jerry

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                          #13
                          GP's ARE like a box of chocolates 😊 x

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                            #14
                            hi alan
                            nice to meet you. like you this is my first forum ever and i have to say the guys on here are great. you can ask anything. its my husband who was diagnosed last year but his diagnosis was quick it was just the virus that got in the way of everything else. you sound like a positive person and the fact that you are still enjoying work and surrounded by a lovely family and yeah keep up the dad dancing its great exercise.
                            xxx

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                              #15
                              Hi Alan, a late welcome to our forums from me. I haven’t been on here as much lately as I’ve been reading lots of kindle books.

                              About trials. I’m registered to do the SMART trial. Anybody with MND could join. Edinburgh has started but the trial centres around the country haven’t started yet. Maybe you could google this trial and then email them. I think that we’ve discussed this on forums previously so if you put the subject in the search box these posts ought to come up. Somebody may have put the trial contact info. I vaguely remember that. Good luck.
                              Lynne
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                              I'm staying positive and taking each day as it comes.

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